Thursday, April 28, 2011

Did you ever have one of those days? You know the ones - when it feels like a month has gone by and it's only been an hour? When you say "if it weren't for bad luck, I wouldn't have any"? That's what today is for me. There's a lot of other stuff making it feel like one of those weeks, one of those months, one of those years, but those are much bigger issues than I'm going to tackle here right now. For today, it's just one of those days.

Friday, April 15, 2011

The world lost a phenomenal woman this week. Lillian Bader, known to me (and by extension, to thousands of others) only as Gram: a tiny little word for the woman with the biggest heart I've ever known.

Lillian Bader
8/9/19~4/10/11

When I tried to think of what I would say at her memorial, I was at a loss for words. Me - the speaker, the teacher, the writer - and I was speechless. I guess that's because, as I said when my friend lost his mom a few months ago, there are no words. Then I picked up a journal I had, with a picture of a lily on it. I had bought it years ago because it made me think of her, so I thought maybe if I used that, I'd be able to come up with something. I asked myself, "what could I possibly say that everyone doesn't already know?" And then she helped me write this.

I was fortunate to have 36 years making memories with my Gram. But it didn't take anywhere near that long for anyone to see how incredible she truly was. Upon hearing of her passing, a few friends shared their thoughts. Many had only had a few brief moments with her, but even they could see ... so I thought I'd share some of their impressions:

My grandma spent her nearly 92 years of life doing nothing but giving... that is, except when she was taking. Gram took napkins, sweet & low packets, plastic forks ... pretty much anything she could grab from the counter. But she rarely took for herself. She took everyone's pop-top rings from their soda cans so they could be used to send kids with renal failure to camp. She took the miniature soaps & shampoos from everyone's vacations so she could donate them to the Ronald McDonald House. I remember talking with a friend about the surprise party we were planning for her 70th birthday. The party was at McDonald's, 'cause Gram was there nearly every day and was friendly with everyone - both the workers and the customers. My friend looked at me and said "my grandmother wouldn't touch a straw from McDonald's!" ... I looked at her and said "well my Grandma steals 'em!"

Three generations Making Strides

Seriously, though, Gram was the most giving person I know. People ask me why or how I do so much charity work, and all I could ever answer was "it's in my blood." Mom, Gram & I were always working together for some great cause: Special Olympics, Making Strides Against Breast Cancer, Relay For Life. But even that wasn't enough for her. Through the JWVA (Ladies' Auxiliary), she volunteered at hospitals, parties for children with disabilities, and any other cause she could find. Even in the past few years, in her late 80s and early 90s, she went to the senior center or the VA hospital to "help the old people."

I remember back when I was about 2 years old, first learning to read: I used to find anything with writing, and try to identify the letters. She had a bag from AAA, and I sounded out the word: "T-R-A-V-E-L ... tray-vel!" Gram didn't have the heart to tell me I was wrong, so she just started pronouncing it trayvel after that. I thought I was so smart - and she was so silly - when I heard that, figured it out, and said "no, Grandma, that's not tray-vel, it's travel!"

Gram always took diagonal pics!

When I was a kid, Gram & I took a few trips together. We went to Pennsylvania - to the Amish Country and Hershey Park, we went on a bus trip to Niagara Falls with a tour of 1,000 Islands. So many great memories, but what stands out most from that was when we went to Friendly's and she let me get a giant sundae that was bigger than my head. I needed her help to finish it ... then again, maybe that was her plan all along!

She also took my sister and me down to Florida when we were little. We visited some relatives while we were down there, but were so excited when she took us to Disney World. I remember going through the It's a Small World ride, but my fondest (and kookiest) memory was Dumbo. We went to the ride based on Dumbo, the flying elephant. My sister got in one elephant by herself, but since I was too small to ride alone, Gram got in with me. As we went around and around, we watched as all the other Dumbos started flying: higher and higher they went, while ours stayed low to the ground. It seemed like forever that we went round and round, watching everyone else but never getting a chance to fly. We all figured that since Gram was on the heavier side, Dumbo just couldn't carry the weight up in the air. It became a running joke between us, and for years whenever I saw anything with Dumbo, I had to get it for Gram. Maybe 10-15 years later, I went back down to Disney. For old times' sake, I had to go on the Dumbo ride. And then I saw it: a button that you press to make the elephant fly. I guess we just never pressed the button (sorry, Gram)!

Gram's 91st birthday

Gram was such a happy person ... she was always singing. Quite often, it wasn't even a real song, just a melody. If it was a song, she usually didn't know all the words anyway: she would hum, add a da-da-dee-dum, or just make them up as she went along. But one song she knew for sure, and taught to me. She and I used to sing "You Light Up My Life" all the time. I still think of her whenever I hear it:

You light up my life

You give me hope to carry on

You light up my days

And fill my nights with song

Gram, you can light up the world now. And if you ask anyone who ever met you, you always did.

Albert Pike once said

"What we have done for ourselves alone dies with us;

what we have done for others and the world remains and is immortal."

Gram, you have done so much for so many ... you will never really be gone.

Sunday, April 3, 2011

As I was walking down the street today, a man cleaning the area in front of his store called out "hey, pretty lady." A typical New Yorker, I've been trained to ignore such statements, and I kept on walking without so much as turning my eyes in his direction. As I passed him, he called out again; this time, he said "have a great day." And I felt terrible for ignoring him. So I turned around, and said "thanks ... you too." And then I felt stupid as I thought to myself, "what makes you think he was even talking to you?"

** If you like what you read, tell a friend! Actually, tell me too - post a comment below!! If you don't ... well ... I'm all for honesty, but please be gentle!

Meet the Buttahfly

About Kerry

​I'm a glass-half-full kind of girl. More than that, really - I'm the girl who'll point out that if it's not full, you don't have to worry about spilling your drink every time you pick it up!

I am extremely fortunate to be married to my best friend - the boy next door I had a crush on since I was a child. Though we've been married nearly 17 years, people who meet us still think we’re newlyweds … and in a way, we still are! Through thick and thin, sickness and health, he has been my rock, my anchor, my greatest source of strength and support.

Over the past few years, I've been diagnosed with a number of chronic, autoimmune, and invisible illnesses (see What’s Wrong for the details). Still, I do the best I can to stay positive: this blog is my way of showing those with similar experiences that they are not alone. We may not be able to beat (cure) our diseases, but we can make sure they don’t break our spirits. At the same time, I’m hoping to educate our friends and family – those who want to be there for us, but don’t really understand the extent of our illnesses and how severely they affect us. With a little help, we can get through anything … together.

It's my mission to make a difference in people's lives, and I encourage everyone to do that in whatever way possible. A positive word, a helping hand, a donation (of time or money) to a worthy cause, even a simple but genuine smile can mean the world to someone ... and that someone could be you!

🎶We're Jinglin', Baby!

On December 9, I'll be jingling my bells at the Arthritis Foundation's Jingle Bell Run. Join us if you're in the area ... or support our efforts with a donation. Anything you can do would be greatly appreciated!

The Mighty

I've recently had a number of stories published on The Mighty, an online magazine of sorts for people with chronic illness. View my author page (and published pieces) here.

2017 WEGO Health Awards: Patient Leader Hero (Nominee)

“Sometimes the connections we make in online communities go above and beyond, truly changing our lives for the better.” This award recognizes those Patient Leaders “whose content has opened your eyes to seeing things differently … whose dedication has ignited the advocate within you to make a change … whose work has effected change for their community members. This Patient Leader's influence truly has the impact to make a difference. They're nothing short of a hero.” I am truly honored to be nominated.

I Did It!

Every day in April 2014, WEGO Health provided a prompt, and my posts here reflect my responses to those ideas, in terms of living with chronic illness(es). It was a great experience that inspired me to write more, enabled me to “meet” other bloggers and friends, and empowered us all to share our experiences in a unique and creative way.